Friday, December 18, 2015


*Originally posted 12/15/15*

You would think by now we would have this medical rollercoaster thing figured out. But there are so many twists and turns that we always seem to be one step behind the Noonan Syndrome learning curve. The last 24 hours have been crazy. Here's the summary: Ezra got sick this weekend, and after his fever held on for four days strong, we brought him in for a checkup yesterday. At that appointment we learned that his spleen was bigger than the last check up and that there were abnormal cells found in his last labs (the ones we had done at Doernbecher's a week and a half ago). There was talk that his JMML was returning. There was hysterical crying, hyperventilating, shock, fear, and all the feelings. Then logic and levelheadedness set in and we decided to wait to hear from oncology before jumping to any conclusions. There were hours spent anxiously waiting by the phone today. There was *the* phone call from our oncologist (who we thought we said goodbye to for good over a year and a half ago). Here's the gist: she's not freaking out but she's concerned and she wants to get us in for a bone marrow biopsy as soon as possible which turns out is this Thursday. It could be a fluke, it could be a virus, it could be leukemia. There's part of me that is in disbelief that I am even typing this right now. There's another part of me that always knew something like this could be a possibility (a very remote, nightmarish, and worst case scenario possibility, but a possibility nonetheless). There is no precedent or protocol for JMML returning after remission in an NS patient that we or our oncologist are aware of - I have spent a good part of the day reaching out to my Noonan Syndrome family and emailing and getting the ball rolling to contact other oncologists who have had NS/JMML patients.

We are holding on to the hope that this is just another *weird NS thing* that we will have to deal with and NOT cancer. We ask that you hold onto that hope as well and that you would please pray that we can keep our heads straight until Thursday. We are devastated to even think about Ezra having to undergo this procedure (for the the third time), or to even have to walk into that oncology clinic again as a patient - but we've we survived all of this before. We've come out on the other side stronger, and braver, and better...and we know we can do that again. Ezra is a fighter and this is merely a bump in the road. Please pray for him and send lots of love his way - especially this Thursday morning!!

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